Day 80 - Getting Smarter - Stop Pushing!

It's been a busy housekeeping day. I would much rather be doing something fun, but duty calls. There are a few things that I have put off for a bit too long and I have a busy week coming up, so it's time to get down to business. These weekends when I'm out of commission really get me off track. It starts to feel like I'll never catch up and then more stuff gets piled on, regardless of whether or not I'm ready for it. I'm not even talking about big stuff, just the every day little chores that can so easily get put on the back burner. Yesterday was pretty much a waste, but this morning I woke up with a bit of pep in my step so I am tackling the little stuff that needs my attention.

I'm getting smarter about not worrying about things not being done. When I can get to them, I think about it and when I can't, I try to put that list out of my mind. If I kept a running list in my head of everything I needed to do, I think my brain would explode. I write things down and I have my weekly 'to do' list, but that's no guarantee that I'll even get to what I've written. I'm getting better at setting priorities and if someone who stops by doesn't like my pile of mail on the counter, they will have to adjust. I do what I can do and I am even pretty good at asking for help if I really need it. I don't want to burden anyone else, though, with stuff that can wait. Today my hubby lugged stuff for me and that was a huge help. He can't really help me beyond that, but that's okay. Every little bit counts.

I'm not sure I'll get my chores finished today. I'm already feeling tired and achy from working for just a couple of hours. I'm sitting here writing while I'm taking a break from the physical side of things and shifting to a less strenuous kind of effort. Works for me. I am paying better attention to the signals my body sends and stopping when my body tells me to, instead of pushing past the point of no return. I'd like to finish up a couple of things this afternoon and then take a cup of tea out on the back porch and enjoy the sunshine. Maybe after I take that break I'll be ready to tackle something more. If I do, terrific, if I don't I will keep it on my list and get to it another time. Putting pressure on myself only adds to my stress and that certainly leads to another bad day. I'll be kind to myself this afternoon 'cause heaven knows I don't need another bad day!

Day 79 - RSVP - Sorry, But I Just Can't....

Tonight we are supposed to go to an event celebrating the accomplishments of a good friend. We committed to this weeks ago and I hate to say it, but I just can't go. I know it isn't until later today, but I already know this is not a weekend for me to push. I usually work just three days a week, so Monday and Friday are my re-energizing days - Friday is to recover from three days on the go. Monday is for my recovery from the weekend and to get to feeling better before I have to show up at my desk again.  Last weekend was rough. I spent a lot of time on the couch, including both Monday and Friday. Yesterday, I never got out of my jammies and last night I fell asleep on the couch, and slept there through the night. I woke up this morning feeling just as crummy as I did all day yesterday. Are you kidding me? Geez.

So why describe this litany of misery? Well, I don't think people really know what goes into a decision when I have to say no to something I promised I'd do. It's not easy. I don't want to disappoint my friend and I was looking forward to seeing him and his wife. I was also looking forward to an evening of some good food and dancing with my hubby. I hate canceling on him again, as well. Every time I back out of something he is impacted, and I worry sometimes that I am just a big ole drag of a wife. On a more practical level, I already put the cost of the event on our credit card so we are spending money to stay home. I know from having events of my own, having people show up is important and I will go on the no-show list. I feel badly about that, but I just can't do what I can't do.


Making a decision based only on my energy level today isn't the whole story. I am clear in knowing that if I push myself to go to a party tonight, it won't be good for me tomorrow, or the next day for that matter. Add to the mix the fact that I have a three day conference to attend for work next week, and I feel like I am being pushed to my limit. I am feeling very frustrated. I want to have fun and get out of the house and I want to do my best at work. I want to be a good spouse, mother, and friend. I want to do my hobbies and go on dates with my hubby. I want to enjoy vacations and week-end get-aways without spending my days watching other people being active and engaged. I want to get back to exercising the way I used to and re-claim my body. I want more than what I have right this minute. So now the work begins. I have to get my head and heart around this. Just because this is my situation now, it doesn't mean it will be forever. I can not like what's happening today, but I can still stay optimistic about my future. Today I know I can accept the way it is, living with fibro, but not succumb to it. I can say no to a party tonight but then say yes to my plan for wellness.

Day 78 - It's Getting Colder...Gotta Keep Warm!

It's coming....the cold weather is creeping up on me and I am working hard on not dreading it. My body doesn't like the cold - at all! So come the fall, I need all the help I can get staying warm because once the temperature drops below sixty degrees I start to feel it! My fingers turn white and it feels like the tips are in a hot vice, my toes burn and feel stiff and I feel that the very core of me has been put on ice. Once I get chilled, it's hard to warm up again. This is a part of fibro that makes me yearn for a warmer climate come January! But here I am in New Jersey and I have to cope with what I've got. There are lots of strategies I've adopted over the years that keep me more comfortable when I'm just freezing. You know the drill - at home - heat wraps, a throw on the couch, warm jammies, thick socks and so on. For outdoors - extra warm gloves, layers, super-warm coat, socks and boots and whatever else works.

One thing I do like about cooler weather is cozying up in a nice warm sweater. Last year when I was looking through my storage boxes of sweaters, it seemed that they all looked alike. In my quest to stay warm, had I gotten into a clothing rut? Well, yes, sort of. I am not a shopper, but I do like to feel put-together. I wear my sweaters for as many winter seasons as I can, and I tend to buy a lot of things in whatever store I'm in, just to avoid having to go somewhere else and do more searching. I've also been known to buy the exact same item in three different colors to simplify things. Whatever works. Anyway, I was really feeling like the sweaters I had weren't very comfortable or attractive and you know how it feels to look in the mirror on a cold, dark, fibro morning - ummmm, not good. I wanted to feel that when I got dressed to go out or to work, I looked my best. At the same time, I was dealing with the very real physical discomfort of living in a cold climate and needed to keep warmth a high fashion priority.

So I got playful. I went into a store that had racks of sweaters. I started pulling out pieces in colors I liked, in styles that were unlike anything I owned. That was my criteria - it had to be a choice that was out of the box. I found sweaters that looked good and others that literally made me laugh out loud. I wanted to take a risk and get out of my fashion box - not look like a clown. There was a young woman shopping near me and she helped me sort through my choices. I needed another set of eyes because the sweaters I finally chose to purchase were very far from my typical style. She liked them so I bought them. What fun!!! My goal was to keep warm and to feel good about my style and I think I got it right. So now I am facing this winter with a smile on my face, looking forward to wearing those sweaters again. They remind me to take a chance, get out of my own way and to find a way to enjoy whatever is next.

Day 77 - Where's My Focus? On the Problem or the Solution?

Every day for a couple of months, a strange car parked across the street from my house. I'd be alerted to his presence because my dog barked his arrival and I would peek out of the window to see what all the doggie-ruckus was about. The car was there at all times of the day - dinner time, three in the morning, mid-afternoon. There was just no pattern to the time of day that long black car would appear. But the driver's routine was almost always the same. He'd stand outside of his car, smoking a cigarette, with the trunk open, talking on his phone. At first I didn't think much of it, but it became an almost daily routine, plus, when I walked my pup where he usually parked  I could see the pile of cigarette butts he left next to his car. He was there a lot! I was starting to feel a bit unnerved, wondering about this fellow. Was he up to no good - like selling drugs or arranging some kind of grown-up mischief? I didn't know and I wasn't about to go up to him and ask.

Finally one day I was leaving for work and there he was. I felt strange leaving my home unprotected, knowing this man was watching me leave. What to do? Well, I wrote down his license plate number and went my little local police station. The officer ran the plate and while his computer searched for information he reassured me that I had done the right thing in reporting my concern. Better to be safe than sorry and he would have wanted his wife to do the same thing in that circumstance. Then he laughed. Funny? What the heck was so funny? Well, it turns out that the car belonged to a neighbor from just a couple of blocks away. He must have been sneaking away from home to have a smoke. Kind of like my ninety-year-old neighbor way back from when I was in my twenties, who had to stand in the bathtub and blow his cigar smoke out of the bathroom window because his wife forbid him to smoke in the house! At first I felt embarrassed standing there in the police station doing undercover work on a local smoker, but then I felt relieved. The mysterious man was there again this morning, smoking up a storm, but no big deal.

This story reminds me that making assumptions without getting the information I need uses up a lot of energy that I could put to better use, especially if I've assumed the negative. It was a few weeks of feeling uncomfortable before I faced my issue with that mysterious black car and put my fears to rest. If I want to keep my energy high, I can address whatever comes up that is causing me fear or discomfort, and then do my best to clear it away. That way my energy is reserved for more important things. I can ask for clarification of a comment made to me that I don't quite get, instead of stewing about what might have been the intent. If someone makes a mistake I can cut them a break instead of it turning into a big thing. Or, instead of being fearful of a symptom I'm experiencing, I can check it out with my Lady Doc and start to work on a plan. My world is filled with all kinds of things that go bump in the night. I can spend my life afraid and offended, or look for the most positive intent in people. I can use my energy to seek the answers I need to help me to feel more grounded,  secure, and working toward a solution. Guess it boils down to focusing on the solution rather than the problem. That seems like a much better use of my energy.

Day 76 - You and Me - Perfect Together...Day 76 and Counting

Yesterday was Day 75 of my daily writing. I feel really good about sticking with this, even on days when I didn't think I could get it done. The start to my writing coincided with a much needed two week vacation, so doing my daily entry just became part of my new away-from-home routine. After I got back, it got a little harder to find a chunk of time to write as well as to gather my thoughts and find a bit of inspiration that could fuel my words. I found that quieting my mind and letting my thoughts drift usually led me to something that felt important to me or had relevance in my day and in my recovery. I have a whole bunch of "starts" saved in my computer that never went anywhere. I began writing and the topic just didn't hold my interest or didn't flow. And it's interesting - those saved pieces don't do me much good when I go back to them on a day that my writing feels blocked. I try to work from one of them and it just doesn't happen. Darn! But I've found unless my topic is in the moment, it just feels forced and too hard to write. When the words flow, it feels the right track for that day.

 

I am sharing with you, Dear Reader, bits and pieces of my day and my life that give it meaning, direction and focus. I'm asking myself some hard questions and then sharing my thoughts with you, hoping that we will connect in a meaningful way. Some of it feels good to share and some of it feels a little risky because I am telling you about me, warts and all. When I am feeling ill, I feel like I have lost a bit of me and this writing and the now collection of seventy-five pieces gives me a feeling of confidence and the belief that this journey is heading in the right direction, regardless of the outcome. I've had to persevere, think things through, keep my heart and mind open and to look at life from different perspectives. This exercise is keeping me motivated and engaged, excited and appreciative. I love that we share a few minutes of each day and, form the bottom of my heart, I Thank You for being with me. It means more than you could know. 

 

So, on Day 76 I am focusing on what got me to Day 75. I feel so blessed to have you following me along on this journey. I love hearing from you. It does seem that we share so much on a human level, not just the fibro stuff, that it is becoming a connection that I really enjoy and look forward to continuing. It's also about the fact that I am writing for my wellness not with a sense of pressure to get this done daily, or feeling guilty if I don't post one day. Even though this has become part of my routine, my discipline in working toward wellness, and a path for me to express what's on my mind and in my heart - it is FUN!!! I read that if I have a goal that I want to reach, instead of saying "I will ...." The more motivating strategy is to ask myself "Will I accomplish this?" Then, answer, "Yes!". I have asked that question on many days and I can see that my answer has been, "Yes" each and every time for the past seventy-five days. Oh, just 289 to go! Will I do 365? For sure!

Day 75 - A Space to Call My Own

When I moved from the house I had lived in for nearly a quarter of a century, I knew there were things I would miss. The back porch, the family gatherings that spilled into many rooms, my little pond that was part of a garden I built when I was going through a divorce, and most of all, my own room. Just like a child loves a tree house, or even a "fort" built with sheets under the dining room table, there is something really special about feeling tucked in and cocooned in a spot to call your own. For a couple of decades I had a home office that I kind of used as my quiet space. It was filled with my work stuff and a ton of books, but it was also a place where I could be alone and be surrounded by things that were important, just to me. It was mine. Having a room to call my own was something I just couldn't give up when we downsized. When it was time to move, my hubby and I agreed that in searching for our new home, each of us would have a place to call our own. We both wanted a space that reflected our individuality and would be a place for retreat. We found a home with a very long upstairs room that we could easily divide in half and give each of us our own space, and it works!

 

I spend a lot of time in my room because it's the kind of place that returns me to who I am, no matter what influences might be shaking the core of me. It took me a long time to figure this room out after we moved in. I'd had an office before, but I wanted this space to  be different. And it is. As I look around, the objects that surround me remind me about what's important in my life. They also mark my past and remind me of lessons I've learned or ones I'm still working on. I have a space for doing my projects and a couple of ceiling-high bookcases, filled with books I've read and ones I plan to get to. I have a comfy chair where I can sit and read or watch a little TV with my feet up, and with a cup of tea. I have little treasures all around my room that remind me of times and places I never want to forget. My room isn't fancy, or perfectly decorated or filled with expensive furniture. It's filled with things that appeal to me, that please my senses and make me feel comfortable.

 

I need this space because it, at the same time, soothes and re-energizes me and puts me right. I can lose myself in a project and work in silence for hours, or I can turn up the volume and get energized by listening to something that gets my blood moving. I can be on my computer or on the phone. I can sit and ponder or I can write. Or I can just sit in my chair. Period. Sure, I can get some work done in my space if I need to, or pay the bills, or call the plumber to fix that pesky leak, but the primary purpose is that I have a space to call my own. It's my spot to be in as I choose. As I continue to search for ways to re-energize and find my balance and strength, a room of my own is just one more strategy I'm focusing on using to help me to be relaxed, strong and focused. 

Day 74 - When Fibro Screams I Have to Listen

There are days when I just don't feel like putting on my happy face and today is one of them. I'm glad I am home alone because I can be miserable, just the way I need to, without those nagging feeling of guilt when the hubby is busy with chores and I am flat out on the sofa. I have been experiencing a nasty flare-up of my fibro stuff and have been mostly on the couch for the past few days. I get up to do what I have to do, then just dive back into the cushions as soon as I can. I missed another family visit yesterday as well as some fun getting ready for Halloween. Drat! These days seem like such a waste of time and I feel left out and ticked off. But I'd rather be alone during a flare so I can drift in and out of sleep as my body needs and I can wake up with my hair looking like it just had a wild party and not think about how silly I must look with a four inch spike shooting from the top of my head. I can eat my meals little by little and not worry about socializing or even smiling or sitting up through a meal. I can wallow if I want to and snap then out of it as soon as my body will allow without any spectators.

These flairs are pretty interesting when I observe them more objectively. They come on with a vengeance and demand to be heard and dealt with. There is no mistaking which part of my body is in charge in that moment. And the flare will stay just exactly as long as it wants to - regardless of what I try to do to make it go away. Warm bath. Nope. Pain meds? Nope. Sleep-rest-sleep? Nope? Sit up? Lie Down? Go out on the porch and soak in some sun? Nope. Nope and Nope. My body is telling me clearly and in no uncertain terms that I am to just let go. No effort, no negotiating, no demanding. I must rest because it is what my body needs and if it didn't scream that message to me - I wouldn't listen. Now there's a lesson for me to learn!

It's sometimes surprising to me that I can be in a really good place in my head, relaxed, and over-all just fine, but still, a flare strikes. I keep working on that good place when I'm right in the middle of feeling lousy - but boy, oh, boy - that's hard. So I am sitting here writing, my vision blurry, my head heavy, but it is the one thing I promise myself that the fibro will not take away. I still have my voice and my power, even if it doesn't look that way. So when I finish this, I am heading back to the couch with my mug of tea, a crisp apple and the sunshine washing over me. I suspect this fog will lift soon. And when it does I will move into my day and be thankful for all of it because even the fog offers a lesson I can learn.

Day 73 - Can We Schedule Morning a Little Later, Please?

I was talking with a high school friend who reminded me that when we were in ninth grade we were on split session. The older kids did the early morning start and we started school around eleven. How perfect! I have never been a crack-of-dawn-early-morning person. But now, well, let's just say my body may be up and around but the rest of me doesn't kick in until much later! It is one of those things that I seem to struggle with every day. Even when I am good to myself and do a slow start, there are days that the fog just doesn't lift until many hours later. It makes it difficult to get anything done and whatever I do seems to take three times longer to accomplish. If I am having a good morning I can get myself out of the house in forty-five minutes. On a typical day, it's more like two hours!!

 

I am working on my sleep schedule and making some progress. I am falling asleep pretty easily and I am also sleeping through the night. The part that isn't fixed yet is that non-restorative sleep nonsense. It seems so strange that I can sleep for eight hours (or even a bit longer) and wake up feeling like I pulled an all-nighter. I am not one to get drunk, but it feels like a kind of hang-over to me. I've done sleep studies and have had blood work that confirms that I am not sleeping well. I don't have sleep apnea but I do have slow and shallow breathing. I've gone the C-PAP route as well as the mouth appliance. Neither worked. I was fully compliant with the sleep mask, but it didn't give the doc the results he was looking for. The mouth appliance gave me such God-awful headaches that it made my head feel like it was about to split in two. So much for that. I am on a good mix of supplements that are giving me sleep duration, now I have to mange the quality of sleep a bit better.  

 

I've adjusted my schedule as best I can to honor the rhythms of my body. I still want to be able to do more during my morning fog time, but I am at a point where most of what I can do is very passive and doesn't require much on my part. When I am doing something of significance, I accept that it may take a bit longer and that I may make a few (okay, maybe more than a few) mistakes along the way. I make sure that I make appointments at a time I can manage and that if I have something early in the day scheduled during the week, I am sure to compensate for that in choosing the other things I'll commit to. Then there's that good old adrenaline that seems to kick in when I'm out and about that makes me confident I can handle some out-of-the-ordinary things that pop up. I am fully aware of the play and pay nature of fibro and sometimes it's just worth it to go full-steam ahead and have a great time or a great day knowing that my comfy couch is there to catch me the next morning.

Day 72 - What Do I Want and What Do I Need?

As a parent I learned not to ask why my kids did something they knew was wrong, or why they made the mistake they did. Lots of times they just weren’t thinking or they were simply being young and impulsive. Asking “why?” usually got me a shoulder-shrug and the genetically programmed, “I dunno” response. Not very useful. As an adult looking into a kid-sized world I could really understand how easy it could be for a little person to mess up, to make a mistake, or test the boundaries. What’s interesting to me is that even when we’re all grown up, we do the same kinds of things, just on a different scale. It is possible, and maybe even probable, that we do things that we know are going to mess things up but in the moment (or the week, month or year) we suspend our good sense because we are meeting a momentary need, we’re fearful, or just too comfortable to make the hard choice. Maybe we even fly in the face of our own best judgment and ignore that inner compass that usually keeps us on the right path. Life would be so very easy if all of us always did the right thing, at the right time, and for the right reason. We try, but it sometimes takes a few attempts at something to get it right!

In the cosmic sense, the answer to the why questions may never be within my grasp - as in the, “Why was I born?” kind of question. But on a practical level it may be useful so I can work at not making the same mistakes over and over again. The question that usually got me the most authentic response from my own kids and kids I worked with was, “What did you want?” or “What did you need?”, rather than the standard, "Why did you do THAT?" I've discovered the want and need questions are good for me when I am working to unravel a decision I made that I now see wasn’t so hot. I can look at my wants and needs I was seeking to meet and find a better way to meet them. When I am grumpy, that’s the time I need to really watch my words and my tone of voice. When I look back at the times I snapped at my poor hubby, I can answer those questions and start to make a better plan instead of naming all the reasons I was feeling snippy. What were my wants and needs? When I’m grumpy I need a hug. Or, I need some space so I can get myself glued back together. Or, I want you to not match my mood and cut me some slack! If I can express my wants and needs they are more likely to be met and I then it’s more likely I will feel like my best self.

Those questions can also help me resolve little issues as well - like when I forget to take my meds. If I ask “Why”? I can spin off a dozen reasons - distracted, forgetful, out of the house, didn’t put my med pack in my purse, and blah, blah, blah. If instead I ask myself, “What did you need?” It leads my thinking toward a resolution of my issue. I needed a reminder system so I wouldn't leave the house without putting my med pack in my bag. Now I can focus on creating a system instead of getting mired in my excuses and weaknesses. I can move forward. If I am having computer troubles and working myself into a frenzy and can ask myself - What do you want or need?” Well, first of all I want the darn thing to work. Secondly, I don’t want to feel this frustrated and dumb. What do I need - HELP!!! So instead of stewing over my inadequacy I pick up the phone, call tech support and get some assistance. Not every answer to every question to my self about my wants and needs will be as easy to access. My wants and desires are often subtle and hidden even from me. But what I know is this, if I can make more conscious choices that are aimed at acknowledging my wants and needs I will be more aligned with that inner compass that helps me to feel fulfilled, accomplished, connected and satisfied with this life I'm living.

Day 71 - Missing, Needing, Wanting My Girlfriends

Some folks choose to walk with me on my journey and others choose to walk away. I am sitting here today missing an old friend. We were friends for forty years and shared just about everything that was going on in each other's lives. Once she was married, we spent decades being a long drive or a flight away from each other. But that didn't stop us from being the best of buddies. We saw each other a couple of times a year and always made time for each other to get together, but it always seemed too short. Then, her hubby was transferred to the town where I was living and we had the chance to be in-town buddies. We both had high and happy expectations for what that would mean, but life had some other ideas in mind. Between one thing and another we drifted apart and the friendship became strained.

I never thought that what we were going through would end our friendship, but it did. Within just a year or so of her moving to town, things in my life got crazy, well make that crazier than usual. And she, of course, had her transitions to deal with and her own stuff to manage. We talked a lot about what each of us was going through. Maybe we each talked a bit more than we listened, or maybe our lives had really gone in different directions. I don't know. I just know that for me, life was really hard and complicated that one year. It started with the horror of  September 11 (I live in northern NJ), then my Dad's passing just two months later. I was meeting the needs of both my daughters (one of whom was back home after we removed her from a group home that just wasn't working out) as well as nurturing and enjoying a budding, but challenging, relationship with a man I eventually married. Add to that a recent divorce as well as the pressures of owning a business and geez. It just seemed like a lot. That year was intense and it was the next winter that I was diagnosed with fibro and I just wasn't the same anymore. I'm sure there are things I should have done differently, and I am not saying that I am without fault in the weakening of our friendship. That doesn't mean I don't miss my old friend.

I miss her friendship but I know I could never go back to it. Sometimes what's done is done. I sent a Christmas card last year and I wrote that we wish so many people a Merry Christmas, it doesn't seem right not to extend those wishes to you and your hubby this Christmas. I didn't hear a word back. That's what makes me really sad, that our decades of sharing and supporting and laughing with each other ended with such a thud. I know things could have faded away even if I didn't have fibro, but I do believe that all of the canceled dinners and get-togethers and all the plans that never materialized contributed to its end. I know that she was as excited as I was to be living near each other, but sometimes the expectation of how things will be doesn't match the reality and that's tough to accept. My life living with fibro is different than it used to be and I have a number of friends who have just faded away. I miss the dinners out with the girls or the times we just got together over a cup of tea. I miss having parties and company and I miss being the kind of friend that can do something on a moment's notice. If I want to have good friends I have to be a good friend. In my head and heart, I'm there, and very soon, the rest of me will be there, too.

Day 70 - Gotta Get Off the Hook!

I am having a really hard time getting my brain around a blog for today. I had a few starts and stops last night and I tried again this morning - but nothing is coming to me. I am really tired today and my brain just doesn't seem to be firing on all cylinders. So, I am going to take myself off the hook. I am going to let this go and know that is it okay for me to not have an idea. I am sharing this because I think it is important to let ourselves off the hook when we just can't get something done. Or if it's done late, or even done at not quite the same standard that others have come to expect from us. I haven't been very good at letting myself off the hook. I certainly have my days when not much gets done. But those things never come OFF my list - they just get saved for another day. When something isn't as good as it can be, I notice it and I have caught myself continuing to think about it for longer than I should. If I say the wrong thing or do the wrong thing, once I have made my amends, I have to let it go. I often remember those small instances long after others have forgotten.


I had an interesting phone conversation the other day. My college is having a reunion and I was going to call a few women that were part of my group back then. The first call was to someone I liked and we had a nice relationship, although we weren't the best of friends. One day, when we were at school, she was feeling homesick and we were talking about it over lunch. I had my cute Little Blue Beetle, which I loved to drive, so I offered to drive her home for the afternoon so she could see her family. We hopped into my car and off we went and it was all-in-all a very pleasant afternoon. I felt like I had done something good for someone and I got to drive my car for nearly four hours round-trip. As we chatted the other night, I bought up that memory (which has stayed with me for more years than I 'd like to count). She didn't remember it - not one little glimmer of recollection. Hmmm. So there you go, what I thought was such a big deal was just a small blip on her radar. What happens in the moment stays in the moment, except when it doesn't.


We can't choose what we will remember or forget as we go through life with all of its mini dramas. And we certainly can't count on someone else to remember every little thing that happens. I bring this up because we can get really wrapped up in the little stuff, stuff that doesn't mean all that much and in the great  scheme of things is really insignificant. So if I choose to let something go, or let myself off the hook, it probably isn't as big a deal as I think it is. I just need  to remember to do it with kindness, clarity, without whining and to not put someone else ON the hook I just removed myself from! I am getting better at seeing opportunities to let things go and to not beat myself up over it afterwards. Instead I can use that energy to get healthier and to give my self a little boost when something gets off the list for good! Oh, and I guess the idea for a blog did come after all.

Day 69 - Where Do I Really Hurt?

When I was in the eighth grade my mother called us in from being outside with our friends so we could get our baths before dinner. We didn't come in the house quite fast enough and she was furious. My punishment? She cut off my long blonde hair. I sobbed through the assault and was furious, humiliated, and felt totally powerless! She cut my hair and I was devastated. But here's the part that I think was the most dangerous for me - the next day I put on my happy face, and went off to school. Once there I got lots of compliments from my teachers and friends about my new short hair - it was a dramatic change overnight. I smiled and accepted their compliments, all the while hating what had been done to me. Talk about stuffing emotions! Crazy, huh? I believe my childhood stress laid the foundation for fibro to visit my body. All the emotional conflict, and fear, as well as the physical pain I experienced is directly connected to my body's expression of a lack of wellness.

I wonder if someone can have big physical pain in their body without deep emotional pain in their soul. I wonder if I am tired of something I'm likely to lose energy and be exhausted. Or, if  I am sick of something is it likely I will get sick with something? My inner self gets expressed in my outer condition. I get that, but my big question is - what is the pain I might still be hanging onto that keeps this fibro pain in my body? What has me so emotionally exhausted that my body is expressing it in overwhelming fatigue and low energy? People I know tell me this illness doesn't match my personality - they say I am vibrant, energized and full of life. So where is the disconnect? Every journey I launch, challenge I must face, problem I need to resolve or experience I enjoy is really an opportunity for soul growth or nourishment. They are opportunities to explore big lessons or small ones. I am not fibro, I don't have fibro. I am experiencing symptoms of fibro and this is a temporary situation. I am not sick - I am getting well, better every day, actually. That is my mindset.

Wellness happens on many levels and the symptoms I experience with fibro can be a great teacher. As I learn these lessons at the deepest level, I can free my body from having to express my inner "stuff". Some of the lessons are very basic - when I'm tired - rest. Is that so hard???? Well, yes. But I'm learning. Brain fog? What is clouding my thinking? What do I need to clear from my thoughts? Can I get clear about some issue hanging over my head? Migraine? Why worry about something 'til my head is about to explode? Maybe I can let go and instead trust my heart to lead me. Some of the lessons are bigger - how do I balance my needs with the needs of the people I love? How do I let go of some of the pain I still carry from losses and challenges I've faced? How do I put things in the past that belong there? How do I let go of regrets and guilt that do not serve my highest self? These are the biggies we all deal with and I am no exception - my soul still has plenty of growing to do!  So I'm remembering to keep my focus on my inner self. When I spend time staying in touch with that inner voice, I get messages to guide my wellness from the very heart of me.

Day 68 - Turning My Upside Down Life Rightside Up!

The word fibromyalgia entered my vocabulary nine years ago. Up until then, it was one of those multi-syllabic words that I couldn't quite get my head around. Back then there was no facebook or social networking sites that could put me in touch with fellow sufferers. I felt alone and confused and not quite sure what this would all mean to me and to the life I was living. So much has changed over these nine years.I'm sure I have had fibro since I was a teenager, and it probably started when I was in college. I was in the hospital twice in the second semester of my freshman year and throughout college I suffered from terrible headaches, IBS, and seemed to get sick more easily than my friends. Throughout my young adult years I had the same issues as well as fatigue, lots of wandering pains, and was diagnosed with Mixed Connective Tissue Disease when I was just thirty years old. But I clearly remember the day that fibro entered my adult life to stay and it has been with me ever since, every day.

I was teaching a class of adults one early winter night. I was about half-way through my presentation when my brain kind of checked out on me. I felt exhausted and I got confused. I couldn't remember what we had accomplished so far, and where I was supposed to be heading. I had the class work in small groups while I tried to gather my thoughts. It was a very frightening moment. I got myself together enough to finish the class. I got into my car to leave and proceeded to slam my car into a pole in the parking garage. Now I really was freaked out. I just couldn't get a grip on things and I had no idea what was happening. I was having a fibro crash and didn't know it. I got myself home and crawled into bed. I can't tell you what happened next, because I really have no idea.

At some point over the next month or so my eye doctor suggested that I might have fibro because of the symptoms I was having in addition to the double vision and dry eyes she was treating. Since that time I have had many good days mixed in with some long and terrible flare-ups. I am remembering this story today because It's getting cold and those first few nights with a chill remind me of that winter night when my life turned upside down. I am taking steps to right myself and I sure hope this winter is kind to me. This next year I'd like to celebrate the anniversary of my fibro diagnosis with a true-life story of recovery and wellness. Stay tuned.

Day 67 - Testing, Testing, One, Two, Three.....

Routine health care seems to take a back burner to my fibro care. I feel like I am always in a doctor's office and it gets to be a bit much. I am sick of making appointments, waiting room magazines, endless waits when I am on time and the office is far behind, and afternoons spent in a doctor's office rather than out and about living my life. This month is breast cancer awareness month and I  know women near and dear to me who are survivors. I put off my repeat mammogram for longer than I care to admit, but my Lady Doc simply said, "That is unacceptable." So, off I went to have it done, along with a bone density test. I was absolutely fine on both counts. Whew!

 

It was important for me to take that step for preventative care and to also realize how easy it is to ignore little nagging symptoms and to attribute them to the fibro. One thing I am concerned about is that I will attribute something to the fibro and an important health condition will go untreated because I ignored it. I feel like I do enough complaining about how I feel on a given day and I don't want to add to that boring list of this hurts, that hurts and I am exhausted. My responsibility is to educate myself about my condition so that I will be able to more accurately discern  which of my symptoms may need a second look. Sometimes my questions seem foolish to me, but a good (make that a great) doc never makes me feel silly for asking.

 

So today I am going to encourage all the sweet, wonderful, fun, witty and intelligent women I am in contact with, to please make sure to have your annual tests done. And please, if something isn't just right, trust your instincts and see a doctor - or another one if you aren't satisfied with the answers you're getting. At the end of the day, we are our best patient advocate. We know our bodies best and although it may be one more afternoon sitting in an office, it may be just what the doctor ordered to get us on our way to complete health. 

Day 66 - Mom Energy vs All the Other kinds

Somehow, when my daughter with special needs comes home for a couple of days, I always seem to find the energy to be with her. I love that we have a great relationship - she knows I adore her and I can always make her laugh. The two things we seem to enjoy sharing most are upbeat music and a good chuckle. We like to be with each other and she loves being home with me, the hubby and of course, our dog! She seems to delight in everything happening around her and I love to do things to make her happy. There is a bond between us that has grown from silly things like, belting out a tune together, dancing in the kitchen or sharing a laugh that takes her breath away. On one hand I am amazed that I have the energy for her that I do when she comes home for a visit. But on the other hand, it is no surprise to me that as a Mom, I can often do things for my kids that I just can't seem to do for myself. I believe that as mothers we go to the ends of the earth to make sure our kids are happy and well-taken care of, no matter how we feel, because we want to be there for them and we know they rely on us. 

 

Yesterday was a chaos day. The painters were here to do windows in three different rooms, as well as staging everything in the sunroom while my daughter was here. It was supposed to be done last week, but you know how those things can go. We spent some time with my other daughter and her little ones and that got us out of the house. After a fun dinner together, I had to shop for some fall clothes for her to take back with us today. It felt like the entire day was a whirlwind. I fell asleep on the couch last night and overslept his morning, so I woke up with my "to do" list pounding in my brain. I got a lot accomplished with her and for her, but there is always so much more to do. When my daughter come home for a visit it's pretty intense. She needs help with most of what she wants to do and I stop counting the times I hear my name called for one thing or another. But, I wouldn't trade it for anything!

 

I wonder what it is that allows us Moms to rally when something essential is at stake. Certainly there have been times when things didn't work out so well on that front, but I usually can pull from my reserve and make sure my daughter has a good visit. On my way to go get her, I had a bit of a crash that was fixed with a roadside nap, but once she got in the car to come back home with me, all systems were go! I don't know how I'll feel tomorrow but I plan to ride this high that I'm feeling today. I know I need to continue to work on my energy conservation and prevent days like the ones this weekend that really do put me on overload. But like I said, that Momma instinct just kicks in and I am ready, willing, and able to be available to my kids. So for today I'm feeling good - I'm happy and satisfied. Tomorrow will bring whatever it brings and that's okay because I had a very good today! 

Day 65 - DUI - Driving Under the Influence of Fibro

I used to fight sleep when I was driving and felt my eyes getting all heavy and gritty instead of pulling off the road. It was almost painful to have to stay awake but I used all the typical strategies to keep me going. You know the drill - open windows, loud music, sitting up really straight, singing along with a peppy tune or sipping a cup of coffee just to try to make it home. There was one night I actually went off the road and felt the rumble of my tires as they hit the gravel off the side of the paved road. That was, no pun intended, a real wake up call for me. No more tired driving. Ever. No matter what. Period. It wasn't always late at night when I felt that kind of overwhelming exhaustion. I could be that tired driving in the morning or early in the afternoon. I never really know when fatigue will overtake me and make my travel nearly impossible.

Driving tired is not a good thing. One of my fibro docs once warned me that in the state where I live, a person who has an accident because of behind-the-wheel sleepiness is given a DUI. Yep. It's considered to be driving under the influence because you are not fully capable of making a split-second decision when you are tired and sleepy. You can also get a DUI if a police officer notices you driving erratically, or sees you drifting between lanes because you are dozing off. Pretty serious stuff.

Yesterday was one of those days on the road for me. The fatigue struck while I was trapped in stalled traffic and I had to get past the congestion before there was a place for me to pull over and rest my eyes. I really struggled to stay alert. I wound up taking a forty minute, sound-asleep-nap in a bowling alley parking lot. Not an ideal location, but I just couldn't drive any farther without falling asleep behind the wheel. I have some strategies for sleeping in the car that keep me feeling safe, but yesterday I wasn't even thinking about my overall safety or security. I just needed to sleep. I will say that after a forty minute nap I was more awake - but man did I have a nasty migraine. I woke up, popped a couple of pain pills and waited for them to start to take effect. Only then was I ready to get back on the road. I lost a full hour of travel time.

There are so many ways my life is impacted by my fatigue that I sometimes don't even care about pain management. I can live with aches and pains and I have my meds to get me through a migraine. But the overwhelming tiredness where I go from awake to exhausted in a moment is the hardest thing to deal with. I have slept along the road in more places than I can count and I have found myself stranded on trips where I just couldn't drive home. That is not a good feeling. I am nine weeks into my recovery and my pain is better - but this fatigue is another story. I want to be able to get on the road and know that I can get where I need to go and then back home again without stopping for a nap, or worse yet, getting stranded. This has got to get better!! My bed is for sleeping - not my car - got that, body??

Day 64 - When Doing Nothing is Doing Something

"You can't come over today because I'm going to be cooking sausage". That may be the best reason I've ever heard for someone declining a visit. But at least it's an excuse. "I was late because traffic was a mess". That one is pretty good - and might even be true. Or how about, "Our plans changed and we are going to be away this weekend". That one works for me. The previous statements helped the people delivering them get themselves out of a sticky social situation, or gave them a reason for not getting together. We are used to those social niceties and almost expect that when someone cancels on us, shows up late, or doesn't want to get together, they will have a reason and it makes everyone feel a little better when it has been expressed.

Over the years I just can't even count the number of times I've begged off, cut out, arrived late or simply forgotten a social engagement. It is really hard for me to have to keep saying, maybe, we'll see, can I let you know later or just plain, no. I have been out with a friends and have had the energy drain right out of me and have had to leave. I've canceled dinner plans at the last minute because I couldn't muster up the energy to get there, I've made promises that I have had to break and I won't do that anymore. No promises, just loose plans. My family and a few close friends are really good about this and my colleagues at work seem to be too. But there are times when I just want to do nothing because for me, doing nothing is doing something! When I am on the couch I am resting, recuperating, or getting my energy back. I'm not flat out because I want to be - I would much rather be out having fun or at least hanging out at home doing something I enjoy.

We live in a very busy culture and it seems the busier we are, the more important we appear. It proves we are in demand and desirable. It means we have friends and interests and we are in the mix. When someone squeezes us in for coffee we feel lucky to have found the time. Busyness can be good for us and so can doing nothing, and either one in the extreme certainly can cause a problem. I am making peace with my pace and making sure I make time to do the really important things I have to do with enough energy left to get to the things I want to do. It's all up to me how I frame this and how I strike that balance. I want the people I care about to know that it isn't about them when we don't get together - it's about me and I'm working really hard to put that distance between us in the past. Once I do that, it will be time to get together. No excuses and I'll be there on time! 

Day 63 - Ever have a Bummer of a Day?

Today seemed to be a test of my resolve. It was a long drive to the fibro center and an even longer drive home. I was caught in New York City traffic and there is just no easy way around it. I'm confused about the timing of all these meds I'm taking and can't seem to figure out exactly when I should be taking each one. This morning I realized that I thought I was taking two of them and I hadn't even opened the seal on the bottle from when I picked them up last week. When I did my pill boxes I checked those two off my list but then never did sort them into the daily doses. Aaargh. I want to get this right, but when sorting pills is a problem - that's a problem. My hubby went to the nursing home to visit my brother last night to save me a trip, but then my brother called today all upset because he thinks I've deserted him. After a short conversation and reassuring him that my hubby's visit counts as a real visit, he settled down. I'm behind on just about every task at home from laundry to sorting mail and blah blah blah. It is so bo-oor-ing to complain but I am tired, tired, tired.

 

My usual strategy when my head is in this space is to take a step back, re-group then tackle something manageable. I am meeting my dear, sweet, son-in-law who is the male version of Martha Stewart organized. If anyone can get this med mess figured out - he can! So that makes me feel better. My hubby is in the kitchen grilling up some chicken for dinner and fixing dinner is now one less thing I have to do, and for that I am grateful. Today's pile of mail is sitting next to me and it's about four inches high. Yesterday's is still on the counter so this will go right on top of it and tomorrow is another day. So annoying. I don't like feeling frustrated and discouraged. I want to be upbeat and positive and look for the silver lining. There really isn't a great reason for me to feel a little down today - the sun was shining and nothing bad happened. It was just one of those days.

 

Ever since I could find information about it, I have read about the power of positive thinking. I believe in it. I also believe in what I call a rendezvous with reality. If I am to know myself and honor myself I have to be able to accept that I may not always be exactly on track. I can accept that I'm going to have a crummy day every now and then, and that I might not be a model, positive-thinking citizen. On a bad day I'm allowed to feel it, say it and experience it. When I can do that, it's more likely that the feeling will fade away. No sense in stuffing it. There is a time for putting on my happy face - and I do that well. But there's also a time when I don't have to be smiling - I can be mellow, frustrated, grumpy, unhappy or dissatisfied. What I can remember that it is just part of me and maybe just part of my day. I can live it, then let it go. My unhappiness or dissatisfaction deserves no less respect from me than my happiness. So now that I've written all of this down, I'm feeling a bit better. I think I'll go have my dinner, then have a nice visit with my son-in-law. It just might turn my day around. I'd like that.

Day 62 - Competition. Good for Me? Or, another Affliction?

At a recent work retreat a few of us got together to play cards. It was a blast! We laughed, teased, won hands, lost them and overall had a super evening together. We weren't ready to give up our game, so instead of playing to 500 points, we play to a thousand. Fun stuff! The next night a different group did it all again and then another evening, again. It was a friendly competition and there were a couple of beginners, but that didn't matter a bit. The idea was to be together, share the luck of the draw and maybe win some points. I used to play cards a lot, but it isn't something that my family gravitates toward, so it was a real treat. The other nice part about it is that we were relaxed and no one got all freaked out because they didn't win. Killer competition isn't much fun for me, but I'm also not playing to lose. Healthy competition may be a tough balance to strike.

Sitting down for a couple of hours and watching a great show on TV also used to be a nice way to relax or unwind after a long day. Now, it seems that everything you can imagine has turned into a contest. Want to eat healthy and lose a few pounds? You have to do it faster and better than the next person, or you're a loser? Would you like to learn to dance? Okay then, let's do it in public and have your every beginners mistake broadcast to an entire nation and then, for good measure, let's humiliate you by placing your score in the bottom three, and then kick you out. Or, do you like to cook? Well, you can't possibly be excellent in the kitchen unless you can do it under extreme time pressure with some maniac screaming at you while you are trying to sear the perfect scallop? Want to prove you're smart (or dumb)? Put yourself up against a few obscure facts that you supposedly learned for half a minute in grade school then announce that no matter what you have achieved as an adult - you aren't even as smart as  a ten year old. Please.

I love a good contest as much as the next guy, but I choose when I want to compete, the challenge I'll take on and the competitor I'll face. I like a pretty even match where either one of us can win if we put our best into it, although I've been known to be embroiled in a pretty competitive game of Candy Land with a three-year-old. That's intense. I do watch some competitive shows, but the constant judgement is starting to get to me. I'd rather just watch the stories unfold as people take on their chosen challenge - but I suppose that might not capture the drama the audience is seeking. But my question remains - does everything have to turn into a competition? If I'm not good at something, have I earned the label 'loser'? If I don't learn quickly do I deserve not to be in the game? My pace is a little slower these days and I might not be the fiercest competitor, or even the competitor I used to be, but I have chosen my battle and I intend to win in. My game lasts for another 303 days and the game is on!

Day 61- Old Stuff is Good for the Brain

I'm not much of a shopper and I really do hate the mall experience so you won't find me hanging out there or meeting a friend to do some window shopping. My daughter gets me to go along with her every now and then, but it's usually an in and out thing where she's going to pick up something in particular. But I do love little shops that sell antiques or other unusual things. Yesterday I was in a shop that smelled like cinnamon and was filled with just the kind of things I like to have around my house - handmade pottery, wooden bowls and kitchen utensils, textiles and old books. The shop had an entire room filled with old magazines. and periodicals.  I found a stacks of science magazines and paged through a few. What a treasure! Looking at them kept me busy for most of the ride home (honest, I wasn't the one driving).

I purchased a few editions that were printed in the 1930's and a couple more that were from the early sixties. It is amazing to me how much our culture has changed and how much of our progress can be documented just by looking through some old journals. There were articles written about someday going to the moon and what that could mean to our understanding of the world and the universe. Other articles discussed the possibility of using stationery satellites to advance communication in the areas of radio, television and telegraph. (Guess they didn't think of cell phones or a GPS). There were medical devices that looked positively barbarian and ideas whose time has come. An article in a 1960 publication stated the spending for national security would be 40.9 BILLION. I didn't think I got that right, so I read it again. Billions in the 60's? I thought that kind of spending was a NEW problem. Consider me corrected.

So here we are still at the beginning of a new century and I'm wondering what folks will be reading about us in fifty or even eighty years from now. Will the ailments that afflict us now become a thing of the past? Will our high tech phones, computers, and  entertainment centers look as antiquated to them as much as their cars, planes and trains look to us? What does the future hold for our children and grandchildren? Are the advances we're making going to make their lives better or just more complicated? Closer or just close enough? Will we find new technologies and discoveries that will end suffering and bring us a better quality of life? Who knows. What I do know is that my little trek into the past got me thinking and I felt curious and interested while I was diving into those old journals. It was great fun to explore a forgotten time and learning something new is a great way to feel alive and engaged.

Day 60 A Few Rocks and a Little Bit of Balance

A cairn is a man-made pile of stones that is built in lots of places, in lots of cultures, and has a variety of meaning from the religious or spiritual to simply marking a trail. They have their own beauty and can be a loose random pile of stones or a planned structure. They are often used along a hiking trail where hikers add a stone as they pass by. I really like the simple cairns that have one stone balancing perfectly on another and are built up as high as the creator wants it to go. It might have seven or eight rocks, or even more. There is no cement or glue holding them together - it is simply a perfect balance. On a trip to California a few years back, I was driving near San Diego and saw that someone had built cairns out of boulders - they just sat there on the side of the highway, perfectly balanced on each other, sometimes with the tiniest point of contact and they were amazing. I've never forgotten the way those rocks seemed to know how to sit just so.

This past weekend I was walking through a little town up in the mountains. The last time I was there I noticed a series of cairns that were built behind the benches along their main street. They were still there this trip and it was neat to see that they had not only lasted, but had been added to. I kind of have a thing for cairns, so I thought that I might add my two cents and build one of my own. So I started gathering rocks and stacking them one on top of the other, and finding that perfect point of balance in each. Two rocks, three, then four and each one effortlessly found its place. It was pretty cool! When I was finished I felt a sense of satisfaction and accomplishment. I realized that I could not have found the balance between those rocks, if I had not found it within me. It certainly was no Piccasso or Rembrandt but I felt like I left a little piece of beauty in the way those small rocks played on each other.

A few weeks ago when I was in the mountains I decided to build a cairn to mark a spot during a retreat. It was raining and I didn't want to get wet so I balanced my umbrella in one hand and began stacking rocks with the other. Each time I placed a rock, it fell off. I just couldn't find that sweet spot that would connect the rocks in a perfect balance. Why was one attempt so successful and satisfying while the other was a dismal failure? It seems clear to me that if I am tired, unfocused, distracted or more concerned with my physical state than the task at hand, it makes things harder. When I was working on the cairn this past weekend, I gave it my full, yet relaxed concentration and it felt effortless. The time before I was leaning over, and with one hand, I was making a half hearted attempt that just wasn't going to go anywhere, so I gave up. I am learning to go easier on myself on those days when I can't give something my all. If something that is usually effortless seems like a struggle, maybe it's not the right time to take it on. If I know it's in me and if I just wait another day I can show up feeling more healthy, balanced and ready to make it happen!

Day 59 - Lessons Learned from a Stinky Situation

One lovely, warm, and just about perfect summer night, my hubby and I went for a walk in town and stopped at a local restaurant for coffee and dessert. They had a large patio set aside for outside dining and since the night was so wonderful - we decided to take full advantage. It was lovely. We sat there enjoying each other’s company and some good conversation when hubby whispered, “Stop. Do not move!” I froze and looked straight ahead at him, waiting for a bit more information. He repeated his command and added, “Look next to your chair.” I did - and saw a skunk about to walk under the table right next to me! In that one moment I was both exhilarated and petrified. Then I felt him brush past my leg. Whoa. Then he just hopped up on a low wall next to the table and meandered on by. He seemed to be in no hurry or even aware that he had caused an immediate rise in my blood pressure. I’ve been near skunks before, but that was a close encounter of the scary kind!

What an experience! And so out of the ordinary. That kind of a happening usually leads me into wondering about its meaning, as in why the heck did THAT happen? What I take from it may or not be true, or have any real meaning at all, but it does get me thinking. So, when I start that process of figuring it out I just let myself get quiet and allow the thoughts to wander in - kind of like the same way that big ole skunk did - nice and slow and easy. And the thoughts come.….Just because something bad could have happened - it didn’t - so let it go…..Sometimes not saying a thing is the best way to avoid a stinky situation……Just because something bad could happen, it doesn’t mean it will. I don’t need to borrow trouble…….Nothing bad happened, so don’t act like something did! And finally, at least for now, Wasn’t it just great to be so close to such an amazing creature and be safe? Ummm, let me work on that one.

The everyday things that happen to me are mine to interpret. I can explore those moments that seem to carry a message or I can let them pass by. Not every little thing has meaning but not every little thing doesn’t. It’s all about what I’m needing to learn, explore or practice. It’s also about where I want to direct my energy. It just so happens that when that skunk did his little visit, I was smack in the middle of a “stinky” situation. It was one where I said what I had to say and I was waiting for the results. There was nothing more for me to do. As I look back, I can clearly see that the situation passed, and with no harm to me, just like that stinky little critter on the patio. Lesson learned?

Day 58 - Bridging the Gap Between Can and Can't Do

I’m at the lake again and there has been a major change to our roadway. It used to be that our little causeway hugged low to the ground and if you wanted to canoe or kayak from one part of the lake to the other, you had to get out of your boat, carry it over the road and put it back in on the other side. I’ve only done that once or twice and that was plenty for me. So, I have stayed on this side of our little lake and have been fine with that. Things have changed! Our town bought a small bridge that raises just enough above the water so a person in a small boat can get through to the other side. Hurray and meet me on the other side! But not just yet.

I wasn’t in my canoe or kayak at all this past summer. It’s been a tough year and I just didn’t feel like I had the energy to commit to that kind of exercise. But as I’m looking at that bridge - it’s helping me to stay motivated to get stronger. Even though the bridge is raised - it doesn’t mean I won’t have to put effort and energy into taking advantage of it. But that’s what I’m doing - getting my energy up so I can take on that challenge. My goal? Next summer I am climbing into my kayak or canoe and I am paddling to the other side of the lake!

The bridge took a while to build and we have been waiting for a long time for the project to get started, let alone finished. It’s been a process rather than an event, and well worth the wait. It’s like my wellness plan. It sure took me a while to find something that I believe in, that I can stick to, and that I can watch for positive results. It is not without effort that I will re-build this body of mine and then be able to bridge the gap between what I can’t do now and what I’ll be able to accomplish in the future. I signed up for this and I am in it from beginning to end. Hand me my paddle.

Day 57 - Using my Strength to Battle My Weakness

When I was little, I had a baby doll that I adored. I only had one teensy little problem. I could never remember what I named her. So, every day I had to come up with a new name. I laughed when I thought about that when I was about to have my first baby. Geez, I'm her mom - what if I couldn't remember what we named her? How embarrassing would that be? It was only one of a million tiny little details that I worried about as a new mom. As my precious daughter started to grow into herself and become an individual and my confidence began to grow, someone said to me, "Ahhh, just wait, little kids, little problems. Big kids, big problems. You'll see." Was that supposed to make me feel better about all of the insecurities I had birthed along with my daughter? Not helpful, but I must admit I heard that same statement time and again.

Now I'm thinking that statement wasn't necessarily about my daughter growing up and creating bigger problem for me to have to address with her as a parent - maybe it is a message for ME and my soul growth and evolvement as a woman, mother, wife, colleague and friend. Maybe as I get "bigger", so do the issues I have to grapple with. Life, as it has unfolded for me, has been rich in experiences that cause me to have to use my "bigger self" to resolve. Maybe as I grow intellectually, spiritually and emotionally I become ready for greater challenges and then life just plops those lessons in my lap. Maybe I get the lessons because I need another growth spurt!

Life can sure throw some pretty big stuff at us and, like you, I've had my share of things I have had to heal, get over, work through or resign myself to. I wish I could say life has been a wispy dream of one lovely moment leading into another filled with beauty, simplicity, ease and bliss. But is just ain't so. Life has been wonderful, but it's been messy and full of stuff I've needed to figure out or wrap my head around before I could move forward. It took me a while to get there, but I finally learned that those difficult and messy times weren't the exceptions in life - they were part of the complex fabric of my being. That all of those wretched, painful, and complicated situations that lead to my soul searching, and finally healing and growth, were exactly what life is about. If I never had to meet a challenge, face a problem or meet a deadline, how was I supposed to test my abilities or know my strength? How else could I be so sure that I am on the right track in my healing and in my determination to put my life back together. It is that resolve that is going to make fibro a little problem in my life instead of a big one!

Day 56 - No Hope? No Cure? No Progress? Yikes.

This morning I saw my cardiologist and I shared my recent blood work results with him as well as the list of meds and supplements I'm taking as I try to wrestle this nasty condition to the ground. He was not impressed with the plan and made no bones about expressing his position to me. And here I am, feeling all motivated and excited about a possible future of healing for me. I've been pulling out all the stops and feel totally committed to working on whatever it takes to get me better. I have my mind set on getting well and I expect my body to follow. I have every reason to believe I am on the right track. Or am I? Have I been sold a bill of goods? Have I responded to a marketing effort from a group of people who are just taking a stab at this using their "best guess" theory? Am I taking a mountain of pills and potions with no hope of recovery?

I have to admit my resolve was shaken to the core when my doctor said to me, "I don't want to be the one who has to tell you this, but you're not going to get any better. It's not fair that you have this condition and I don't want to make you feel bad, but there is no cure for fibromyalgia and it's a rotten thing to have happen in your life. But I will tell you this, just as I would someone with polio - this is what you've got and it's not going to change. You are not going to get better no matter what your new doctor is telling you." Whoa there - what was that? No healing? No change? No opportunity to get my life back again the way it used to be? Nope - not according to him. Not possible? What do I have then, if I don't have hope? He also said, "Why do you think the doctors you have seen before this one haven't been able to help you? It's because there isn't an answer and giving you more of a drug that doesn't work in the first place won't help your condition." Yikes. Talk about having the rug pulled out from under me.

So where do I go from here? I don't quite know yet. I have to let this settle in and I have to think about it some more. I want to talk to my Lady Doc and find out more about what we're doing and again, why she thinks it is the right path for me. I will never stop searching for a way to feel complete again. I am not obsessive about it and I do accept that for this minute in time I have fibro issues and the fatigue is a real problem. But just because I accept that, it doesn't mean I will succumb to it. I still have another 310 days on this journey. Don't count me out, yet!

Day 55 - Hey Doc - You're Fired!!!

I have done my share of doctor hopping. I usually give a doc three, or maybe four visits before I make my decision to switch. I don't take the decision lightly - I know that I am dealing with a condition that doesn't have easy or clear answers. The doctor that diagnosed me was a neurologist that I respected and I got some good results from his suggestions and the meds he had me try. He was intelligent, curious and compassionate. He was terrific! Unfortunatley, he retired and I was left with a huge void to fill. So my search began. I left one fibro doc because I was having a drug reaction from a med he prescribed. I called him, but he never called me back all day on a Friday. I wound up in the emergency room. Bye-bye. Another doctor has published some very interesting books about fibro - but he always seemed more interested in his research than in my needs. He must have invited me to participate in a study half a dozen different times. Each visit he seemed to have forgetten what he asked of me the last time and was onto something new. See ya. Yet another doctor didn't seem to hear me and each visit I felt like we were starting from square one. I recently got a copy of her notes and she was incorrect about many of the things she recorded. I almost wonder if those are actually my records! Too-da-loooo.

My cousin recommended yet another doctor for me. I liked her and she seemed competent. I stuck with her for almost two years but I kept getting sicker and sicker. The visit that really turned it around for me was just a few weeks before I found my Lady Doc. We had a very hot summer - more ninety degree days than usual, and I was just wiped out. At the end of July I saw my doctor and went through my litany of complaints hoping there would be something else I could do to get my life back in order. Instead of hearing something that would give me hope or set me in another direction she just said, "Yes, you're going to feel bad in this kind of weather. It's rough for everyone. I'll see you in three months".... What?? That's it?? No new magic pill or potion that will make me feel like I can make it through a day? No suggestions, strategies or adjustments to what we were already doing? I left there enormously discouraged, not knowing what to do next.

Almost as an answered prayer, I found the network of fibromyalgia centers and a center that was within a reasonable driving distance for me. After just two months I feel like I am definitely on the right track and that wellness is within reach. Already I have noticed a decrease in my headaches, as well as some relief from the almost constant pain I had in my legs. The weather has turned a bit cooler and I know that makes a big difference on the plus side, so I will see if it's one thing or the other. While I'm on my way to dealing with the symptoms of the fibro and chronic fatigue, I know I am getting healthier because of all the tweaks we are making to my system. I am doing what the doc has told me to do and I am optimistic. In the end I just want two things from my doctor - expertise and compassion. I think that in my Lady Doc I've got both!

Day 54 - Ow, Ow, Ow - Don't Touch Me!

A massage can be heaven - or it can be hell. My last massage was hell. Holy Crap! I have never hurt so much during a "relaxing" massage as I did this last one. I hadn't gone in a while because I just can't seem to find a massage therapist who can get the knots out without it feeling like torture. So I asked who would be the best person to deal with my fibro stuff - that would be Steve. OK, Steve, lets see what you've got. We started the appointment with a general run down of my current sore spots and tight muscles and I warned him that there were places on my body that would scream at me if he was too rough. "No problem", says Steve. HA. Steve should be working out the Green Bay Packers or some other football team players  not sensitive little me. Unfortunately I signed on for ninety minutes of that nonsense. He worked his fingers into my muscles like he was digging for buried treasure. No style, no finesse, just rough and ineffective. I don't know what kept me on that table, except that I kept moving him from one place to another on my beat up body hoping it would get better. No more Steve for me.

There have been other times when practitioners wouldn't listen to me when I told them they were pushing too hard. Like the physical therapist who worked me out during our first session to a point of fatigue where I had to sleep in the parking lot before I could drive home. Or the other therapist who stressed my body so much I couldn't even drive myself and had to have someone pick me up. Or how about the acupuncturist that put in too many needles in me during our first session and I developed an off-the-chart migraine and was so sick my daughter had to come for me. Or the water aerobics instructor who worked with patients with chronic conditions and she knocked me out, too. Do any of these people know anything about fibro and chronic fatigue when they say they do?

I've got the kind of fibro pain that reminds me of a bee hive. Everything is calm until you go messing around with it. Then all the bees come storming out in a rage - ready to attack. My muscles are like that. Sometimes I don't even realize how much pain is simmering inside of them until I touch one of those parts that is super-sensitive. When the pain hits, it is hard and strong and then feels like it is just oozing into my muscles like liquid heat. My feet can be just fine, then I put some lotion on, and rubbing my instep causes a huge painful cramp. Or my calf muscles will be okay, but feel a little crampy. I'll rub along the bone and OW the pain just radiates up my leg. I know what hurts and what doesn't and when I go to a body work practitioner, I expect them to respect what I say and not go plowing ahead running their own agenda. I feel like I should wear a sign that says, "Don't touch - but if you must, go gently". My muscles need it and I deserve it!

Day 53 - Community is Just a Click Away

I grew up in a sleepy little suburban town and I just loved it. It was pretty much like every other suburban town you would imagine back in the 1950s. Neighborhoods organized Halloween parades for all the kids to show off their costumes, there were parks and playgrounds where we could play softball or get together with friends. As we got older, there were dances held at those playgrounds in the summer night. It was all so cool. Behind my house were deep woods that held a real fascination for me and my friends. We spent hours wandering around in there - building forts and bridges across the creek. In the dead of winter we searched for good sized puddles that had frozen over. We took our ice skates out there and stayed for as long as our freezing fingers and toes would allow. We felt safe and connected to that place and to each other.

Community is important to me. May be it comes from those early days of being in a cozy little town where the librarian knew me and all of my friends and where we could walk down to Main Street when we wanted to do a little shopping and feel some independence. Community means connection and it means that I am reaching out to others just as they are reaching out to me. I like being in town and running into someone I know and having that two minute conversation that makes us feel connected, or going into a store and having the person behind the counter remember some small detail of my life. I like the feeling that I belong and that there are people who relate to me in that same way. 

The whole concept of community has shifted with the internet and all of our devices for keeping in touch. Now it seems it is equally important to be included in the cyber world as it is to be recognized while walking down the street. It is wonderful that people with very specific commonalities can find each other in this big ole world. I love to be in touch, and I must admit that it is easier for me, especially on low energy days, to rely on technology rather than having to get up, get dressed (to be at least presentable) and then haul my tired self out into the world. I will always love seeing my friends, family, colleagues and neighbors. I also know I can make quite a nice little world for myself without leaving my chair.

Day 52 - What am I Supposed to Do Now?

There was an event coming up and I had one of those days where nothing in my closet seemed just right. So I figured out which store would be most likely to carry what I wanted, headed there, picked a dress and came home with it. No big deal. Mission accomplished. The night of the event arrived. I hopped in the shower, did my hair and put on my make-up. All that was left to do was to step into that dress and put on the finishing touches. I was all ready to go and took one last look in the mirror - and GASP - the security tag was still attached! What???? How did that happen???? Drat! I quickly found something different to wear and off we went.

When I had a few minutes to think about it I started to wonder - what am I supposed to do now? If I wanted to wear the dress the tag had to be removed in the store. The dress fit, so I didn't keep the receipt, so how was I to prove that I didn't just take it out of the store and it was really mine? Oh, now my head was spinning and I was getting just a little worked up over it. How would I prove my innocence? How could I walk into a store and set of the alarm without it being noticed and once I got in the store, how would I convince the person at the sales counter that I really did pay for the dress? Part of me just wanted to ignore the whole thing and just leave the dress hanging so I wouldn't have to deal with my discomfort. But then another side of me kicked in and I had a new point of view.

I knew what had happened. It was an honest mistake and I am an honest person with integrity and I knew I didn't take the dress without paying for it. Maybe there was some shared responsibility here, since the alarm didn't sound as I exited the store with my security tagged garment. So, I headed back to the store and I walked in with confidence. The alarm went off and I just kept walking. No one followed me or asked any questions. I marched right up to a sales person in the dress department and explained my situation. I took a deep breath and waited for her response. "No problem", she said. The store was having some difficulty with their tag system and I was probably one of the customers that went through security when it was de-activated. Whew. That was easy.

How many times have I done something or said something and someone else decided my intent (or the other way around)? Geez, there is so much distance we create between us and so many arguments and conflicts that could be avoided if we could just find a way to clearly explain our intent. Part of that, though, is for us to understand it within ourselves. I know I've asked myself, "Why did I say that"? or "What was I thinking?" when I've had a situation blow up in my face and I am surprised by it. Truth be told, sometimes I don't know or understand my motives. They can be complicated or reactive or even not very noble. Sometimes I have to think about something again and again to have it finally dawn on me what the heck I was doing and why. We are complicated beings and what we do and how we do it isn't always easy to understand. Balance comes for me when I stay open to that exploration and I allow it in others.